The prevalence of dementia is rising rapidly across the European Union, necessitating comprehensive national and international responses. National Dementia Strategies serve as key policy instruments, outlining priorities for dementia care across European countries. While numerous organizations have proposed ethical principles to guide dementia policy, limited knowledge exists on ethical priorities in EU dementia policies. This study examines the ethical principles embedded in European national dementia strategies, analyzing their definitions, contexts of application, and relative emphasis. Using framework analysis, this study systematically analyzed 17 European national dementia atrategies, identifying commonalities and variations in ethical priorities. Findings reveal a broad spectrum of ethical principles present across national dementia strategies throughout the EU. However, findings also suggest significant variations in how principles are interpreted.

Young-onset dementia occurs during life stages when work and family responsibilities may still be present. These circumstances mean that persons with young-onset dementia often face support systems that are not fully adapted to their age, needs, or daily life. Although family-centred approaches are increasingly recognised in dementia care, limited knowledge exists about how couples living with young-onset dementia understand and make use of support in daily life. This study explores how support is experienced and integrated into the shared lifeworld of couples, focusing on practical, emotional, and existential aspects of daily living. Eleven couples participated in dyadic, semi-structured interviews. A meaning-oriented thematic analysis, guided by lifeworld research, was used to explore how support is understood and incorporated into daily life. Three themes emerged. Negotiating independence and support in daily life describes how couples balance emerging needs with daily routines and autonomy. Navigating complex systems in search of adequate support highlights the challenges of encountering fragmented structures and unclear responsibilities, often requiring persistence to identify relevant services. Experiencing a balance between expectations and daily support shows how support becomes meaningful when it aligns with the couple’s daily life and current needs. Overall, the themes demonstrate how couples work together to maintain daily life while managing emerging needs and navigating fragmented systems, and how support is most helpful when it fits their life situation. The findings underscore the importance of support that matches the life circumstances of couples living with young-onset dementia and the ways they make sense of their daily lives.

Purpose: We assessed the relationship between prescription of medications (both individually and in combination) and consequential falls.

Methods: Medication prescription and prospectively registered falls over 2.5 years were extracted from 441 participants within a Swedish National Quality Register. Conditional generalized estimating equations, considering dependence of longitudinal data as a cluster to correct confidence intervals, were used to relate medications (individual and in combination) and falls.

Results: Regarding individual-medications, Angiotensin II receptor blockers and diuretics (C09DA) were significantly related to incidence of consequential falls (p = 0.022). Six drug combinations significantly related to fall incidence. Most frequently, falls were observed when platelet aggregation inhibitors (B01AC) were prescribed with C09DA, opioids (N02AA), or blood glucose lowering drugs (biguanides, A10BA).

Discussion: Caution should be taken when prescribing cardiovascular medications. Further, prescription of platelet aggregation inhibitors could increase the incidence of a negative outcome of a fall when prescribed in people at risk for falls. 

Background

To promote patient safety, international guidelines highlight the importance of a joint plan for continued treatment in older persons. Accordingly, in a co-design initiative involving older persons and healthcare professionals, a medication plan was developed. This study aimed to assess the feasibility of applying the medication plan for older persons in primary care. The objectives were to examine the feasibility of the medication plan in clinical practice and to examine the feasibility of methods that could be used to study a broader implementation.

Methods

A prospective study design, using both qualitative and quantitative methods, was employed. During appointments at primary care centres, physicians (n = 6), persons aged 75 or older (n = 21), and, when applicable, their next of kin (n = 2) collaboratively agreed on a medication plan, which was documented in the electronic health record. Over a 3-month follow-up period, data regarding the feasibility of the medication plan (usability and fidelity) and the feasibility of the research methods (recruitment and retention rates, data collection, and outcome measures) were collected.

Results

Usability assessed by the System Usability Scale scored a median of 51.3 out of 100 for physicians. The participants’ experiences of the medication plan’s usability addressed functionalities, individualisation for relevance, resources, and a de-prioritised medication plan. Fidelity was assessed based on 8 out of 15 older persons reporting that they had received a medication plan, and 59% of all prescribed medications had documented goals and/or comments. The recruitment rate was 75% for physicians and 70% for older persons. There were no changes in polypharmacy and no contact with healthcare due to suspected adverse drug events. The participants’ perceptions of the medication plan’s ability to promote patient safety addressed awareness and information, challenges beyond the medication plan, and patient involvement.

Conclusions

The implementation of the co-designed medication plan encountered challenges related to usability and fidelity, requiring collaborative refinements of the prototype. Additional difficulties arose from using a low-fidelity prototype in clinical practice. Our results emphasise the strength of combining qualitative and quantitative methods to capture participants’ perspectives on the medication plan’s ability to promote patient safety. Before conducting a larger study, the evaluation methods require further refinement.

Trial registration.

ClinicalTrials.gov NCT06016140 (retrospectively registered).

Temporal aspects of falls are not well characterized in people with Parkinson’s disease (PD), particularly those later in life. The purpose of the current study is to characterize the timing (across day and year) of falls in people with probable PD compared to non-PD peers. Swedish registries were used to identify 441 people (mean age, 83.7 years, range = [59.0–100.0]) with one or more prospectively registered falls over the course of approximately 2.5 years. Of these participants, 40 were prescribed drugs of the class N04 “Anti-Parkinson Drugs”. Of these 40, 30 were prescribed dopamine or dopamine derivatives, suggesting presence of PD, and 10 were prescribed “other PD-related medications”. Given the unclear nature of these 10 participants, they were excluded from all analyses. Chi-squared tests and Generalized Estimating Equations were used to assess the time of day and year of falls in people with probable PD (n = 30) and non-PD (n = 401) accounting for covariates (age, gender, number of prescription medications). There was a statistically-significant effect of PD-group on fall time of day (accounting for gender, age, & number of prescription medications), such that Swedish residents with probable PD fell less often in the evening than the day (p = 0.015, OR = 0.61). Across the whole sample, female participants fell less frequently at night than the day (p = 0.032, OR = 0.73). People with probable PD fell more frequently in the spring months than other seasons (×2 = 32.1, p < 0.001). The finding that people with probable PD exhibit more falls during the day than night is consistent with previous work and extends knowledge to show a similar result in older, more frail people with PD. Characterizing the temporal nature of falls in people with PD can provide additional context to other fall circumstances, thus improving our ability to treat and predict falls in this group.

Objectives: Understanding the timing of service access for persons with young-onset dementia is essential for developing adequate support. This study aims to describe the formal support available for persons with young-onset dementia in Sweden and identify factors influencing its provision over time.

Method: A prospective cohort study was carried out using data from the Swedish Dementia Registry (SveDem), focusing on persons diagnosed with young-onset dementia between January 2009 and April 2022 (n = 2592). Descriptive statistics provided a comprehensive overview of the population, and Cox Regressions were used to analyse factors associated with the time to receive support services post-diagnosis.

Results: Living with another adult and higher MMSE scores were significantly associated with later access to home help services (p < 0.001) and care facilities (p < 0.001). Higher MMSE scores (p < 0.001), older age (p = 0.023), living with another adult (p = 0.010) and diagnosis at primary care centres (p = 0.016) were also associated with later access to day-care services. No significant associations were found between age, sex, medications, care setting, living arrangement, or MMSE score or with the time to access counselling services.

Conclusion: The timing of access to support services for persons with young-onset dementia varies significantly, particularly for those living with another adult. These patterns may reflect a hidden caregiver burden.

BACKGROUND: Health and social care staff play a significant role in detecting and reporting abuse among persons with dementia. However, they are often left to their own judgements which can lead to elder abuse not being detected or acted on. The aim was to explore what healthcare and social care staff consider elder abuse, and their experience of elder abuse perpetrated by family members of persons with dementia.

METHODS: This mixed-method vignette study was conducted in Sweden during the year 2021. In total 39 staff working in dementia care were included. They first answered the Caregiver Scenario Questionnaire and then participated in a group interview.

RESULTS: An inconsistency was revealed regarding whether a management strategy for behavioural difficulties included in the Caregiver Scenario Questionnaire should be considered an abusive act or not. No participants were able to identify all five abusive behaviour management strategies. Participants described witnessing 101 abusive acts including different types of abuse of a person with dementia, with emotional/psychological abuse and neglect being most common.

CONCLUSIONS: Health and social care staff who work close to older persons are able to detect abuse perpetrated by family members. However, inconsistency in defining abusive acts demonstrates the uncertainty in identifying abuse. This may lead to abuse not being identified, but it also creates feelings of inadequacy among staff.

Background and Objectives: Preventive care is vital in maintaining health and supporting independence among older persons. In Sweden, a national quality register (Senior Alert) was developed in elder care to support healthcare workers working to prevent malnutrition, falls, pressure ulcers, and poor oral health. However, we predicted that challenges in providing care at home result in preventive work being least used when and where it would be most effective: early in disease processes. The current study examines the preventive care actions planned and performed for older persons with identified risks, to compare quality and equity of care in different care settings. Methods: Persons from the Swedish Screening Across the Lifespan Twin Study registered in the Senior Alert were included in the study (N = 2914). Descriptive and analytical statistical analyses regarding risk assessment and planned and performed preventive actions were conducted among those persons registered in hospitals, home health care, nursing homes, dementia care homes, or short-term nursing homes. Results: Almost 80% of the sample had identified risk in at least one of the four risk areas, with falls and malnutrition being most common. Risks differed between care settings, and having any risk was most common among older persons in short-term nursing homes. The largest difference between planned and performed actions was for older persons with home health care, and especially true for the oldest persons (>80 years old). Conclusions: Preventive care is vital as it is often easier to prevent than treat, and pressure ulcers, malnutrition, poor oral health, and falls are common among older persons. However, preventive actions were less likely to be performed in the home health care, especially for the oldest adults. Reasons for this might be related to challenges of performing care in a person’s home, lack of knowledge, and organizational challenges, but further investigation is needed.

Background

Studies have shown significant heterogeneity in the longitudinal progression of dementias, including Alzheimer's disease. Growth mixture models have detected up to 4 classes that differ in both baseline Mini-Mental State Exam (MMSE) and rate of decline over time. Most analyses focus on adults over age 65 and investigate group differences in demographic and health variables.

Objective

The current analysis focused on adults with young onset dementia (YOD) and examined the role of demographic and support variables in differentiating latent classes of longitudinal progression of cognitive status.

Methods

Sample included 1025 adults (55% women) registered in the Swedish Dementia Register prior to age 65 with at least 3 registrations. Age at baseline was 38 to 64 (mean = 59.3, SD = 4.1); follow-up duration ranged from 1 to 12 years (mean = 4.6, SD = 2.0).

Results

Growth mixture models identified 5 classes: high baseline MMSE and moderate decline over time (48.5%), intermediate baseline MMSE and moderate decline (34.5%), high baseline MMSE and steep decline (13.4%), low baseline and generally stable MMSE over time (2.6%), and high baseline with precipitous decline (1.0%). Latent classes differed in age at diagnosis, diagnostic categories, number of medications, and having home help services.

Conclusions

Results highlight that YOD is just as heterogeneous as later onset dementia; therefore, it is vital that people with YOD get early diagnosis and a case manager to help identity and meet their individual needs.